Friday, April 6, 2018

hope is medicine





I have sat down so often, writing a little bit of an update, but it never feels quite finished so I wait.  And begin again another day. But no two days are alike anymore.  I'm in a continuous cycle of dealing with new physical challenges each day it seems, and I just don't ever seem to go back to "normal."  Its a "new normal" everyday.  But here goes just a little of what it's been like. 

 I last saw Dr. Panwalkar on a Tuesday in late March.  He teased me as he fired up the computer saying "3 whole weeks have gone by and I haven't heard you ring my phone once!  How can that be?"  

It sets a pleasant tone instantly and I banter a response right back.  Our whole visit is a series of questions and answers and I try to affirm each time that really I'm doing ok.  Until he asks about shortness of breath.  And between Rick and I we paint the picture, without realizing the ball we've set in motion. 

I just can't always get very far walking, without running out of breath.  And I certainly can't clean, or dress, or do normal activities for any length of time without also struggling for air.  

Dr. Panwalkar assures me we will get to the bottom of it with some help from the Pulmonary department.  While a simple xray doesn't show any big differences from the last one, Dr. P still wants me to have testing done.  As he walks me out to infusion that day, I happen to remember and whisper to him, "I just passed my seven year anniversary since diagnosis on the 16th, thanks to you."  He smiles big and wraps an arm around me as he ushers me into a seat carefully.  He whispers right back... " and we'll just keep hoping for more..."  His voice trails off as he turns to leave.  I sit, flooded with warmth and hope.  

After chemo, I get a wheelchair ride over to the Pulmonary Clinic and proceed to get hooked up to a device that will track my airflow as I simply walk up and down the halls.  I take off walking and seem to do just fine, but after several trips of walking in a circular fashion, I'm short on breath and cue the technician its time I sit down.  She grabs a nasal canula and oxygen streams into my lungs through my nose.  I sit breathing deep as she announces that my oxygen saturation has suddenly plunged to the mid-80's.  My eyes search her face for an answer to what this means. Oh, you failed the test, she says.  But that qualifies you for oxygen therapy.  

Just.  Like. That.  And I'm home, on oxygen therapy.  Its a long appointment with a respiratory therapist at our house.  He first goes over the concentrator that will sit in the living room area with ample hose attached to a nasal cannula for me to wear.  Then he goes over the unit I can wear across my body.  Except, I instantly discover its quite heavy for me and cumbersome to wear. It exacerbates the pain on my left side, no matter how I situate the unit.   It'll take some maneuvering on my part to be able to wear it out.  

Over the course of the last couple of weeks,  having oxygen therapy has taken some time getting used to.  I don't need it around the the clock.  I don't need it if I'm just up and walking to and from one area  of the house to the next.  But as the day goes on and I need to perform some activity, I require more use of the O2.  Its quite drying to the lining of my nose, despite the constant post-nasal drip I have as a side effect of my chemo. And I've had some headaches that may go with it.  But otherwise its a pleasant feeling not to have to fight for air at times and the panic that can go with it when you don't feel like you'll recover your ability to breathe.  

So just when I felt like I had the breathing part figured out, last week I couldn't shake a sense of light headedness.  I had to go into Roger Maris for a booster shot and told them how I was feeling.  The nurse could tell something wasn't right with my color or my blood pressure.  Soon Lori was sent back to see me, and she went to run everything past Dr. P.  They felt I was dehydrated and needed some iv fluids at the infusion center.  I was lucky, a cancellation had just occurred and I got to go right in.  After a good 1 liter bag was infused a couple of hours later, I was cleared to go home as long as I took it easy and rested.  We just had to laugh that it seems lately its always something, but what will happen next?  

It took me awhile to bounce all the way back.  My counts may have been pretty low and had to restore themselves with help from the booster shots.    In the meantime, I've also been dealing with some episodes of a vasovagal response.  I don't actually pass out, I manage to stay conscious, but my stomach heaves for several intense minutes.  I have intense nausea and it can end in vomiting repeatedly for awhile.  I sweat profusely and shake and then after a good 10 minutes or so, it passes quickly and I recover.  But when and where these episodes may occur, is unpredictable, and hard to manage.  Add all of these things together and you can see why no two days are the same anymore.  

So each day, I try to just succeed at a basic level.  If I can dress, eat, get up and be with my family, etc., that is the aim of a good day for me.  But sometimes, even those basic things can just be a tall order.  Its the way things seem to go right now.  And that is where all the wonderful things you send me, help more than I can say.  I so often have to reach outside of myself, clinging to the bits and pieces of hope that are thrown my way.  I love the Anne Lamott quote... "Because hope is medicine..."  Its definitely something I've come to learn from my one word for 2018. 
















We finally got to see the airing of our story in Dream. State.  Wow!  They did such a great job of piecing together a wonderful story about our family.  We have continually felt so blessed and honored to have been asked to be a part of this show.  I tired embedded the show below and hope it works if you'd like to view it.  Our part starts about 3 minutes in and runs for a few minutes!  I'm so proud of the boys and how well they shared from their hearts about what they live on a daily basis.  It was very fitting the show aired at the same time I passed my 7 year cancer survivorship milestone!  







Thank you to everyone who has sent me notes inquiring about how I am doing.  The outpouring of care and concern continues to bless us and humble us.  Meals still show up at our door and nourish us both physically and emotionally.  Plants, flowers, cards, letters- they bolster us so and we can't say enough thank you's for all that is done for us!  


















When you get lucky

When you get lucky

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